I was diagnosed with PNH in July 2021, so my PNH journey is still a learning curve for me. I’d like to share a few tips that have helped me remain positive and take an active role in my journey with this rare, chronic blood disorder.

Find your joy

It’s been important to find joy in the little things in life. What do I mean by little things? For me, it’s doing Pilates or yoga every morning, which makes me feel like I’m starting the day by accomplishing something and gets my head in a good place. Or getting outside every day, even if it’s just 20 minutes walking around the neighborhood, pulling weeds, feeding my birds, or sitting in a park. I also love taking pictures with my phone because it allows me to focus on something else. And let’s not forget coffee. I enjoy coffee. A lot. I don’t drink it every day, so when I do, I truly make it an experience, whether enjoying it by my fire pit, joining a friend f or a cup, or even making my own flavored whipping cream!

Don’t settle

If you start to feel like you’re not enjoying things the way you used to, think about why and how to change it. Are you are overwhelmed with worry about your treatments or work or home life? Are you feeling run down? Start with building a support network. Surround yourself with people who care about you and lift you up. Whether that’s your healthcare team, families, friends, faith communities, or neighbors, people are out there wanting to help.

Don’t forget to ask for and accept help. Sometimes your support network wants to help, but they don’t know how, so, don’t be afraid to give suggestions. I’ve asked people to accompany me to doctor appointments, and neighbors have picked up groceries and run errands for me. And if anyone offers to bring you a meal… say yes! It can be very humbling, but remember, we are not meant to do this alone.

Help applies to your healthcare team as well. Share your concerns with them. For example, if you can’t do things that bring you joy, talk to your doctor so you can work together to address the issue. I’ve found that nurses, physician assistants, and doctors all have different purposes and experiences and can be tremendous resources.

Embrace it

I’ve found that a little humor and creativity can go a long way in learning to embrace a new normal. It’s natural to sometimes ask, “why me?” Everyone has bad days and times when you wish things were different. During my journey, I’ve found it’s been helpful to try to find the silver linings, which are sometimes obvious, but other times require you to look a little harder (but they’re almost always revealed). For example, instead of my treatments being a boring necessity, I’ve turned them into pizza parties with a few close friends, where we can enjoy some time together talking and laughing just as we would if we were out to eat somewhere. This is my way of embracing my new normal and inviting my friends and family to be a part of my journey.